- Fibromyalgia
- Interviews
Donna's interview
How did all start?
Once the CMT began having an effect on my extremities, the fibromyalgia started with pain all over my body, headaches, weakness in my legs and arms, back aches - I'd never had back problems. Hip pain, sacroilliac pain severe enough to require regular injections in the SI joints.
Do you already have a diagnosis? How long did it take you to get it?
I was diagnosed by my neurologist shortly after the EMG verifying the CMT. It was quickly, and he told me that his diagnosis was definite - no question about the condition.
For what medical specialties have you been treated? What has been the most useful specialty for your?
CMT, Fibromyalgia, Chronic Bronchitis, Hypoxemia, Depression, Anxiety, Scoliosis, birth defect of the spine. Restless Leg Syndrome. Endometriosis.
Back surgery to repair the birth defect and release the pressure on the spinal column.
I wear leg braces to help me walk, and occasionally use a cane.
Hysterectomy to remove endometriosis and repair insides.
What has been the most useful thing for you so far?
Back surgery. I was on gabapentin for a long time for the pain but gave it up because I didn't like feeling like a zombie. Now I just deal with the pain as best I can and take ropinerol for restless leg syndrome.
What have been your biggest difficulties?
Falling, dizziness, blacking out, becoming very weak after years of staying fit.
How has your social and family environment reacted? Have your social or family relationships changed?
I no longer go out and do things because my lack of coordination is a danger, as well as an embarrassment. I interact very little with friends and family because of my inability to get around safely.
What things have you stopped doing?
Horseback riding, crocheting & knitting, sewing, hiking, bicycling, playing piano or organ
What do you think about the future?
I plan to be around for a very long time, to see my great grandchildren grow up.
So far, which years have been the best years in your life? What have you done during them?
My 30's through my 60's because I was able to do a great deal more than most women my age. My years of working out, eating right, and being physically active helped me avoid the problems with the other things longer than I otherwise may have.
What would you like to do if you didn’t have your condition?
Continue horseback riding and being able to take care of them.
If you had to describe your life in a sentence, what would it be?
Life is what happened on the way to my goals
Finally, what advice would you give to a person in a similar situation?
Never give up. Go for your dreams. I'm 70, and have recently completed my BA in English (2016) and my MS (2018) and have written two books in the last two years. This has been a lifelong dream and I decided that if it was going to happen I had to make it happen. And I am making it happen.
